I’m very excited about my new wheelchair coming but talking to other people about what I’m getting and why and how wheelchair services works has been interesting.
There’s been a definite difference between how other disabled people have taken the news of what chair I’m getting (generally very positive) and how able-bodied people have taken the details of what chair I’m getting (quite negative but in a way that I suspect they think is supportive). At times this has been frustrating and even difficult. I won’t go into any more details because this isn’t meant to be a criticism of anyone or anything.
It’s been eye opening and it’s something that I have been thinking about a lot as there are parallels to a situation I see at CAB often but I’ve never really got before now. I still don’t think I get it but I can see how and why it happens more now.
I’m getting a new manual wheelchair provided by the NHS.
I had an assessment with a rehab engineer and an OT today. There was some discussion and after a few minutes I said “So I am getting a new chair then?”
And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”
They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.
So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema. It’s coming in my preferred black.
I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it. But I really hadn’t expected them to be completely horrified by the state of things. It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.
I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.
Today is Blogging Against Disablism Day.
For the last five weeks I’ve been dealing with a somewhat ridiculous access situation. What I actually need should be incredibly straight-forward. I need to be weighed. I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that.
You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.
I’m told I don’t need to be weighed, I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years. But I do now need to be weighed. To keep me safe and more importantly to keep those helping me at sailing safe.
This whole situation is ridiculous. No one who might be in a position to help seems to want to help. Those who offer help can’t do anything.
People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible. Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.
I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.
I swear I’m not giving up blogging but it does seem more and more like I am with how rarely I’m updating at the moment. I would write about my plans for this blog and how I want to write more. But as true as that is writing it doesn’t make me actually follow through on that plan. I do miss blogging but I miss the olden days of blogging (Diaryland and my first year or two on wordpress) more than I miss what blogging is now. It was more anonymous and more of a community and just nicer. Not to say there aren’t positives to what blogging is now. It’s jut different in a way that isn’t good or bad.
Things are oh so slowly improving. I haven’t missed a single dose of Citalopram since I started it and suddenly realised on Monday just how much my anxiety has improved. It’s not a crushing overwhelming feeling of things being too much any more. In fact whilst I do still remember how it felt, it’s almost like the details are fading away making it harder to describe as it becomes less of a daily occurance. The depression side of things still isn’t great but I still need a few more weeks for the full dose to have completely kicked in really. And I am in a difficult situation that’s hard to resolve (a tale for another day) which is likely influencing that.
And most importantly, I’m reading regularly again. If ever there was a sign that things are improving it’s that. And that makes me happy!
For the little things worth recording but perhaps not worth a whole blog to themselves.
- I’ve been on Citalopram for four weeks now. It’s working although perhaps not as good as it could.
- I have high levels of spasticity right now which may or may not be due to the Citalopram. Certain other SSRIs have made it worse in the past so who knows?
- The sailing season has started but at the moment I’m not able to sail. We need to resolve a situation before that can happen and it’s proving tricky.
- Last week I went to see Billy Elliot the Musical with Rach. It was really, really good.
- My powerchair eventually got fixed quickly and easily but the mileage got partially reset when they did it which was weird.
- Lately I’ve been doing a lot of work at CAB helping people with mandatory reconsideration and/or appeals of benefit decisions. I’ve found that I quite like it because there’s a process and it’s often clear but I’m not sure I should like it.
- I went to see Beauty and the Beast on Saturday. I liked it but think I prefer Disney cartoons to live action. I heard something about a live action remake of Aladdin. I consider this a travesty (but wouldn’t say no to going to the musical)
- At the moment I’m listening to a lot of audiobooks and crocheting squares. Currently my audiobook is The Stranger In My House by Adele Parks. It’s good but it’s based on a ridiculous premise that would never happen.
(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)
Two bits of not so brilliant but they could be much worse news are in my life at the moment. I don’t think dominating my life is the right term but they are definitely big factors in everything right now. And not easy. Life is never easy.
I will start with the slightly easier one first – my powerchair is broken.
The easiest way to explain it is to say it has a broken castor. It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).
It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.
The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety. I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.
I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.
Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.
I won’t go into the ins and outs of how everything has been and all that. What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years. A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds. And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit). I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.
Today I am taking part in the blog tour for The Gingerbread House by Kate Beaufoy. I received a free copy of the book from the publisher to review but this is my honest opinion.
Nestled among cherry trees in a picturesque country garden, the Gingerbread House resembles an illustration from an old-world storybook. But beware! For in the fairy-tale, that s where the witch lives…
Away from the city, with no distractions, the Gingerbread House seems like the perfect place to start work on a novel. That’s what former advertising copywriter Tess thinks when she goes there to live with Eleanor, her aged mother-in-law. But Eleanor is suffering from dementia, and caring for her proves tougher than Tess could ever have imagined: feeling increasingly isolated, her only comfort is wine o’clock and weekend visits from her husband. Meanwhile her teenage daughter Katia is helpless to intercede; in the end she can only watch as things fall apart and a tragedy even closer to home surfaces.
The Gingerbread House is a deeply moving novel: a compassionate and occasionally wickedly funny tale of a family’s agonising struggle with dementia.
If I could start this review with a slightly personal note it would be that I’m currently struggling with depression. I have lots of books that I want to read but when it comes to actually reading them it’s been difficult to stick to them. I had no such problems with The Gingerbread House. Reading the synopsis I knew this would be my sort of book. As soon as I started reading it I knew it was going to be even better than I had expected and was hooked. In fact I found it to be one of those books that I read cover to cover in one day – something that even before my current bout of depression had been getting rarer.
The use of Katia as narrator was a genius move -I really loved her character and perspective which was unexpected in places. She kept me guessing a lot and I had to keep reading because I desperately wanted to know what was going to happen. Even when I began to suspect that there was going to be a twist in the tale and think I knew what it would be I didn’t want to stop reading.
In places I could emphasise with Tess and in others she annoyed me, especially at the start of the book. I think some of that may have been deliberate on the author’s part and the rest was influenced by my own expectations of how caring works.
There was a great attention to detail in this book and some of the details of the Gingerbread House reminded me of my own grandparents bungalow when I was growing up. That added to my enjoyment as I’d actually forgotten about one or two of them before reading this.
I can’t say how much I enjoyed reading this book.
Random Bullet Points of Life entries are for when there’s a lot worth mentioning but nothing that needs it’s own entry. Or not a lot of time to get things down and I don’t want to delay blogging any more. Today it’s a bit of both – a few things I want to record briefly and not a lot of time to write the long entry about another subject I have in mind. And I miss blogging!
- I had to delete my blog completely and reupload it earlier this week. Some things aren’t working right (for one thing I don’t think any photos survived) and if you were getting email updates you definitely need to resubscribe if you still want to get them.
- In the last week I have received some excellent looking books to review. So many that I’m not really sure where to start, I keep changing my mind what I want to read the most. I think probably Forever Geek by Holly Smale though.
- Whilst I’ve been listening to a very good audiobook it’s been a while since I’ve actually read anything.
- We finished a digital edition of Tenants Times and I’m really pleased with it. I like our digital editions a lot (but I also like the print ones). That can be found here.
- One of my 101 in 1001 goals is to watch 5 new TV shows from the 1001 TV Series to Watch Before You Die book. I started watching Bones this week. I like it but I can’t decide if I want to keep watching it.
- I haven’t been out for lunch this year. Now I am going out for lunch/drinks with a friend next Saturday and have two offers for lunch on the same day the week after. You wait all year…
- For Christmas I got a set of KnitPro Symfonie Knitting needles and I am very much loving knitting with them. The only problem is I now want the crochet hooks too (luckily they don’t seem to do a set like they do with the needles though because keeping using my current ergonomic crochet hook set is a much more sensible idea.
- I’ve been picking at trying to learn to do Tunisian crochet but it’s not coming easy.
Last Saturday marked six months since I got my Quickie Jive M (I think I can no longer call it my new powerchair). I had done 487 miles in that time.
I was, however, a tiny bit disappointed that I hadn’t done 500 miles because then I could have written a blog entry using the Proclaimers song for a title. I was still going to write a blog entry about having had the chair six months. But I was taking my time getting round to it. Then this morning I did my 500th mile.
So now I can both write a blog entry about having had the chair six months and using the proclaimers song for a title. This is silly but makes me happy.
That’s absolutely flown by in many ways. And it blows my mind to have done so many miles. To have been so many places and done so many things that I wouldn’t have been able to without a powerchair. Some of which I wouldn’t have been able to do without this powerchair.
When the wheelchair tech delivered the chair he referred to it as “black beauty” (because I’d been so insistent on having it in black). It’s still black now but wether he’d still call it beauty I don’t know – it’s muddy with the odd scratch and several loose bits – Mum had to come round as an emergency on Saturday when I found a bolt hanging out and tightened that and several other bits. One of which is already hugely loose again. And it’s noiser than it was.
The number of miles I’ve been doing per month has been lower over the last few months as I’ve been doing less in the cold weather. And my wheelchair batteries are definitely not holding a charge as well as they were because of that cold.
I’m definitely looking forward to the warmer weather and getting out do more things again. I think my next big trip will be Birmingham to see Billy Elliot the Musical in April with a uni friend but I’ve got a date in the diary for cocktails in Reading with a twitter friend and other things are a work in progress.
It definitely feels appropriate to end this entry like this
…and I would walk 500 more!
I didn’t write an entry about what I’d been reading last week because I didn’t finish a single book the week before. I have finished some books since then so I’m back updating this week.
I may also have bought three books and received a review book last week (and received another review book the week before) but we won’t talk about that!
The Secret Life of Lucy Lovecake by Pippa James
This was a fun book and I enjoyed it a lot. I took part in the blog tour for it and my full review can be read here.
Our Tiny Useless Hearts by Toni Jordan
Before Christmas I requested another book to review and when it came I found a copy of Our Tiny Useless Hearts had been included in the parcel too. It was a nice surprise especially because it was a book I hadn’t heard of and on the face of it, it appeared to be a book that I’d really enjoy.
Unfortunately it fell somewhat short for me and I felt like it wasn’t holding my attention well. I did like several of the characters and would definitely like to read more about the MC, Janice. And her two nieces were brilliant, kid characters can be hard to write but I thought these were done well.
There were a few funny moments that I liked but in other places it just felt ridiculous. It’s not a bad book, it just wasn’t for me – I think I would have enjoyed it more if it hadn’t been so many characters with all their complex interactions going on at the same time. If I lived in that house I’d have to move out!
White Lies and Wishes by Cathy Bramley
I don’t have a favourite author as such but Cathy Bramley is definitely one of my favourites. I would highly recommend checking out her books if you haven’t read them yet as I’ve enjoyed them all.
Several of her books have come out in installments and having read two of those as whole books and two of those in installments I’d say definitely wait for the whole book to come out rather than installments. I think I enjoyed those a lot more but it’s really hard to resist the installments as they come out! So for that reason I was glad that White Lies and Wishes was just released as one whole book. I read it in two long sittings over three days and it was just brilliant to lose myself in it.
White Lies and Wishes was fab. I loved seeing the characters grow and change through it. And I especially liked the unusual beginning and unexpected moments that were scattered throughout.